On Wednesday 17th we were thrilled that Asher had reached 5 weeks since her last seizure. For the first 3 months of this year she was having seizures every 2 weeks - so this was a huge breakthrough and improvement that we had been praying for.
Unfortunately on Thursday 18th she had a short vacant seizure at 6pm. She went blue around her mouth again but thankfully as it was only around 1 minute long she quickly got a bit of her normal colour back. She slept for half an hour and then managed to get her normal milk and kefir before her meds at 7. We were hoping and praying that it would just be a "once off" but that was not meant to be.
At around 1am she woke screaming and went into a 3 to 4 minute grand mal (Tonic Clonic) seizure. She went right back to sleep afterwards and I just left her lying between Brendon and I. That was number 1 for the day.
At around 2am I heard her breathing change and felt a bit of shaking in her arms. I put the light on and saw she was having another vacant seizure. Again it only lasted about a minute but she went very grey and there was just no colour in her lips at all.
She slept again but through the next 20 minutes had 4 big jerks (just once off jerks - like a startle reflex). So I was not getting any sleep - just lying there listening to her breathing.
No. 3. Just before 2:30 she had Clonic Tonic with a small scream which lasted about 3 minutes. She again went a bit blue and so we called the ambulance. She wasn't "pinking up" as quickly as we would have liked so knew she would benefit from oxygen. The paramedics arrived and her saturation level was sitting at around 86, so the oxygen helped bring that quickly up to 100 (for a normal person it sits between 95 and 100). It was hard to know what to do because a month ago when she had a cluster of 4 seizures they then stopped on their own. Jacqui (the paramedic who lives down the road from us and has often been here with Asher) had taken the oxygen off her once her levels were up but then we checked her levels again and they had dropped down to 91. So Jacqui suggested we rather just head into hospital. Her gut feel was that they were not going to just stop. And she was so right.
No. 4. Just after 4am - half way to the hospital - she had another 3 minute Tonic Clonic. It was great having the oxygen there for her so that at least she could quickly get back to 100.
Asher now has a "blue card" which means we don't have to wait in ED (Emergency Department) as we have done with all the other visits, but could go straight to the CAA (Child Acute Assessment). I could get the fold out chair open and at least lie down for a bit and try and get some rest.
No. 5. At around 5:30 she had another vacant seizure that lasted about a minute. I heard the now familiar clicking of her tongue. It was great to have the nurses so aware of what was going on so that as soon as I pushed the caller twice they were in the room in a flash. Ready to give oxygen and be that emotional support (for some reason it just feels easier to deal with when there is at least 1 other person with me - even if they are not actually doing anything).
No. 6. At 5:50 she had a 2 minute Tonic Clonic.
No. 7. At 7:30 she had a 2 minute vacant seizure. I had been sleeping but heard her move and saw her lift her head up. She had actually moved in her sleep before that into her normal "on tummy" position and so I had actually thought she would now get a good long sleep. She wasn't waking up though - she was having a seizure. I quickly got her into recovery position and she went really grey so it was great to have the nurses there helping get the oxygen for her.
She would normally wake up by 7:30 to have her meds. I knew she had to have those but was also aware of the postictal state making her very sleepy (I was also exhausted myself). Just before 8am I managed to get her to wake up enough to have some soft fruit puree (easy to eat when you are really tired) and then her meds. Thankfully for me she was still very tired and so she went back to sleep and so did I. The nurses kept the door and the curtains of our room closed and did not disturb us so that we could both get some rest. It is such a blessing that she still breastfeed at least 4 times a day because I just fed her lying down and she fell asleep next to me. This way we were both very relaxed and could sleep really well.
No. 8. Just before 9:30 the neurologist arrived to have a chat. With me getting up she then woke and I put her on the potty (she normally has to go when she wakes up). I had been chatting to the doc and one of the questions he had asked was how I know she is having the vacant seizure. I was describing it as best I could. Asher had just finished on the potty but I felt something was wrong. I looked at her and said "are you ok" and the doc said "she looks ok" and moved to the side - with her following him with her eyes and head. Just seconds after that though a vacant seizure started and a few seconds later I could hear the clicking in her mouth. So I put her down and got her into recovery position. He then asked me how I knew when it was over. It was hard to actually describe. I knew the clicking in her mouth stopped and although she was not having a tonic seizure (where her whole body goes terribly stiff) her body was more stiff than normal. He could see that as he tried to move her a little. So I knew that her whole body would just relax when it was finished. As it stopped her body did relax and what I noticed is that she started blinking and moving her eyes normally too. So the doctor got a lot of questions answered by seeing it himself.
What stands out for me wonderfully about this visit was when he said that he is more encouraged by her 5 week gap than he is discouraged by this cluster. He explained that often children - even when making excellent progress with their epilepsy - can often get these clusters happening. We just have to work out how to stop them. I discussed with him how hard it was to know when to give her Midazalam - the quicker acting AED that we would give if a seizure went over 5 minutes. After talking about her previous clusters we decided that if she had more than 1 seizure in 12 to 24 hours - we would give her the Midaz. He explained that it can be like a migraine (and I know about this with Brendon). If you get onto it really quickly - medication can often work really well at stopping it. The longer you leave it and the more severe it becomes - the harder and harder it is to control and stop. It's the same with seizures. The more the body has, the more comfortable it becomes in that seizure state. So the quicker we stop the cluster - the easier it will be to stop.
So by 10am she had a dose of Midaz and I was thrilled to see her up and she even had a lovely time of eating the pasta bake for lunch. I had her shirt off as she had developed a slight temperature through the morning (I can feel by touch and the nurses confirmed it was around 38). So although not a major concern - it was an indication that perhaps the trigger to this cluster was her body fighting off a small viral infection. Ruth has had a bit of a runny nose and what can often happen with epileptics is that when something else weakens their body - seizures just happen more easily.
No. 9. When it got to 1:30 I was starting to think about us perhaps being home for dinner. 4 hours seizure free felt wonderful. This morning I had unwisely not packed for overnight and not even put a short sleeved shirt in for Asher. So when she had another vacant 1 1/2 minute seizure at 1:50pm it really knocked me. I knew however that we would have to stay overnight and it all just felt a bit much. This also being the worst day she has ever day (the previous being 8 seizures on 5th Jan). Thankfully God blessed me with a lovely friend who even though too many hours away physically to visit - was still able via text messages to be a shoulder for me to cry on.
It was good to just acknowledge how hard the day had been. I really did just need to cry about it all. The one nurse came in to let me know they would be moving us to PHDU (Paediatric High Dependency Unit) for the Phentoyin drip (a very strong AED that would hopefully be enough to stop the cluster). She was very kind and understanding and it was a real blessing to have someone just take time out to sit with me and give what comfort she could.
No. 10. At 2:45 she had a 1 1/2 minute vacant seizure and she went very blue. It is really horrible to see her go so blue - even her ears went blue. I was so thankful that we were in hospital and the nurses were so quick and ready to help. As soon as the nurse got the oxygen in front of Asher I instantly saw her ear turn pink. What a blessing to have that physical support for her through the seizures as there is absolutely nothing else we can do.
We got her line in for the drip (bringing an oxygen bottle with us into the treatment room - just in case) and waited to hear that PHDU was ready for us.
Thankfully I was feeling much better by now. Brendon had wonderfully managed to pack a bag for me with all the things I didn't bring with for an overnight stay and a friend of his who was heading into town dropped it off for us.
At 4pm we got the drip started. I had spoken to the neurologist about how painful the drip was for Asher in January (she cried terribly both times she had it on 5th and 6th Jan). So he told the nurses to dilute it and let it take a full hour rather than the normal 20 minutes. This did help so much and she managed to get to sleep once the first discomfort had settled.
No. 11. Unfortunately right in the middle of getting the drip - at 4:30 she had a long 5 minute seizure. It started as a vacant and then developed into a Tonic Clonic. The doctor who was supervising PHDU rushed over to her when it started and was full of concern and care. They stopped the drip while she settled and once she was sleeping again started it up and the doc phoned her neurologist to just get advice on what to do if another one happened and if Midaz should be given. It was such a blessing to know that they really cared and wanted to do the absolute best for her.
At 5:20, once the drip was finished she got a dose of Clobazam (another stronger AED we have used in the past to help control clusters - a bit stronger than Midaz). Each AED gives a different type of "cover" and lasts for different lengths of time - so I agreed that at this stage it was a good idea - making sure we really do put a stop to the cluster.
No. 12. At 6:20pm she had a 2 min Clonic Tonic. Thankfully this was the last one and we both had a good nights sleep. I was very thankful that PHDU was not busy and there were two open beds next to Asher. We put a sheet over the one (the bed was already made but if needed my stuff could be quickly pulled off and the bed would be ready) and I could use that to sleep on (rather than a leaning back chair). I knew that if any children came in during the night I would have to move - but thankfully there were no new admissions and we could get some solid sleep.
Another blessing in the evening for me was when the dinner trolley came past. The PHDU is at the end of the horse shoe children's ward and the lady said she had an extra parent meal. Normally the mother would get a meal for a breastfed baby under 6 months (so I would not be getting one). The nurse said she didn't know of any ordered and I quickly asked if perhaps the CAA had ordered it for me. The nurse immediately said "lets take that as the reason" and I got a lovely free meal of corned beef and veg. It was delicious and a real blessing that I did not need to head down to the cafe to buy dinner. Asher didn't eat anything after her lunch and so it was a blessing that I had good milk for her for the rest of the day.
When I spoke with the neurologist in the morning he said he was happy to leave her long term AED (Epilum) at it's dose and just see how things go with more quickly stopping any future clusters. With the afternoon's seizures however he had changed his mind and suggested upping it from 4 to 5ml (twice a day) and also giving her Clobazam twice a day for 5 days. Thankfully I had her Epilum with me, so I told the nurses I would be giving her the normal 4ml and would talk to the doc in the morning about it.
With the change of nursing staff overnight it was a different story in the morning. These nurses didn't know I had her Epilum with me and so made up a 5ml dose along with Clobazam. Asher reacts really badly to the Clobazam and so I gently said that I did not want to give her that. The nurse was a bit shocked and said "so you are not giving your consent?" My heart was racing but I knew I had to make the best decision for Asher and I was very strongly convicted that this was the best decision. I had no problem giving her another dose of Clobazam if she had another seizure - but I wanted to rather wait.
When the neurologist came by later we chatted about it and although I was really nervous before it went really well. He was happy with my request to leave it at 4ml and when I suggested rather using the Clobazam only if she had another seizure he was also happy with that. He said that he would personally do it the other way (give the Clobazam preventively and just make sure there are no more) but he respected the fact that we are aware of how the drugs effect Asher. He clearly knows we care for her well and only want the best for her - educating ourselves on how best to make full use of the medication that is available to us.
He said he would feel better if we were still there for a couple of hours, but as Brendon would not be able to get to pick us up before lunch he was happy that we make plans to head home - having those extra few hours close to care if it was needed. Again I thanked God for good communication with her neurologist (even though this was not her main one but his partner who was on duty this weekend). I thank God for their care and concern and especially for their friendliness with the child. It is such a blessing to have doctors who really care for their patience.
Rachel called the Love's to ask if the children could stay there while Brendon headed in to fetch us. We heard from Ruth (Love - the mother - not my Ruth) later that she had thought about phoning to offer but then felt confident that we would feel free to ask. I was so glad she mentioned this as it set my heart at ease that we are not over-using their kind hospitality to our children. The children were obviously thrilled to get a few hours of playing in rather than having a few hours in the car.
Another huge blessing was that Asher was smiling already on Saturday afternoon. It took her almost a whole week to learn to smile after her 11 seizures on 5 and 6 Jan - so this was just wonderful. She was wobbly on her feet on Saturday but already so much more stable on Sunday. There are a few other things that are hard after hospital stays like this. We don't know if it's the actual seizures or the medication or the hospital stay itself. She tends to be very sensitive to noise and will cry very easily if someone else cries or makes a loud noise. She cries a lot more than normal, especially at sleep time. So she gets rocked to sleep for a few days. Thankfully we have excellent pro-biotics and have given her extra for a few days and that seems to be helping her stomach a lot. We do know it's just a time of adjustment though - so even though I write this on Wednesday 23rd - we know that these difficulties will settle down in time and we just have to take things one day at a time.
We praise and thank God for the times of smiling and laughing and enjoying things as she did a week ago. This photo was taken on Sunday afternoon and she had been laughing at Dad tickling her. Just two days afterwards. I can't describe the wonderful joy this brings to my heart.
As I write this on Wednesday evening I also praise and thank God that she has gone for 5 days now with no seizures and no extra medication. A double blessing.
A friend wrote today saying that my strength was incredible. This was my reply:
It's the Lord that is incredible. I know very clearly that it is only His grace and care that has gotten me through this all. It was the worst day she has had on Friday with 12 seizures eventually. On Friday afternoon I just spent a good time crying. It was good to just acknowledge how terrible it was to go through. It is a really horrible thing to watch, especially when it's your little baby. God faithfully comforted me in that time though and it wasn't long before I could smile again and see His many blessings and be comforted by His care and love. He has taught me to trust Him fully and to really rest in Him. It would be too much to bear otherwise.
All praise and glory to God who is my daily strength and comfort.